A group of families using our wonderful homeschooling program that makes it possible for this chronically ill mom to still bless my children with a quality, Biblically-grounded education even when we are "bed-schooling" many days.

Tuesday, June 22, 2010

I know this is going to be more graphic than some want to read, so consider yourself forewarned. But since I have very little short term memory and since the whole baby book/scrapbooking thing has never happened here, I have to write things down somewhere where they will be enjoyed in the future. Lest I forget, here's a recent story about our 4-year-old Little J.

Rick had been explaining to him that pee was called "#1" and poop is called "#2". So the next evening J. walks into our room and asks, "Daddy, could you please put Toy Story Poop on t.v. for us?"

Their selections are now open for public vote and I would so appreciate if if you would take a moment and visit www.resolve.org/vote to cast a vote for Hannah's Hope in the "best book" category. Thank you so very much!!! If you have a blog or a facebook/twitter type account and would be willing to pass this along to your friends as well, I would truly appreciate your assistance! Voting closes June 24.

Monday, June 14, 2010

I recently posted about the potential link between autism and CFS. Today I wanted to mention the immunological similarities between cancer and CFS. It was this shared abnormality in ribonuclease (RNase) L in CFS and in prostate cancer patients that sent researchers actively looking for XMRV in CFS after finding it in a subclass of prostate cancer patients. It is my understanding that there is a notably higher cancer rate among CFS patients than in the general population and perhaps this sheds some light on the reason.

A very interesting lecture (about 15 minutes) about XMRV and specifically prostate cancer (but also mentions CFS several times) is found here.

Not sure what I'm talking about? Check out my post on What Is CFS? :) If you or someone you love is facing cancer (with, or without CFS), here are some cancer support links that may offer a measure of comfort.

I've been quietly working on my next book on the life of Paul for quite some time now. I wish I were further into the project than I am, but if you want to read some recent updates, I've posted a couple at www.GivenMeaThorn.blogspot.com and I would love to have you follow me there for ongoing writing updates. :)

Friday, June 4, 2010

Too tired to make a full post, so here are Facebook updates I've made over the past couple of days:

Wednesday at 7:41pm

We are half way through Little J.'s 24-hour EEG. Since bedtime's in 20 minutes, if he goes down easily and sleeps well (don't know how easy that will be with 20 wires glued to his head) then we will just get up in the morning and head to the neurologist's office and it will all be over. Don't want him to have another seizure, but if he's going to, tonight would be a really good night for it to happen!

Thursday 10:31am

Grabbed a treat from Doughboys on the way home from EEG this morning. Don't know when we will hear results, but he got through the night without pulling out any leads! I was up basically once an hour through the night because he kept rolling around and tangling up his wires, but he sure looks adorable this morning with curly (he isn't usually curly) "bedhead" until we can get the rest of the glue washed out. :)

Thursday 9:05pm

Think we are going to be combing glue out of Little J.'s hair for weeks. Glad his 24-hour EEG is over. Now we wait for results. I gave another 9 vials of bood (4 pokes) tonight & am hopeful that we don't have to do anything else medically for anyone few a days now! Ready to sleep for about a week...

This morning

"...do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Cor 4:16-18

Noon today

Little J.'s 24-hour EEG results are all clear! Nothing else we need to do right now besides watch and wait to see if anything else happens from here. Thank you for your prayers!

1:30pm

Think the last bit of fight I had in me to keep me going through our son's testing has fizzled. Managed to be out of bed for about 20 minutes this morning and 15 minutes this afternoon. Tummy's been hurting since last night (gal bladder again?) and so exhausted I'm shaking. About to take some meds, have our oldest stick on some educational DVDs, pile the kids in bed w/ me and curl up in a ball.

Very frustrated that my absentee ballot never showed up. I'm supposed to be registered for permanent absentee due to disability, but somehow I'm not on that list anymore. Was too sick to do early voting this week even when i was offered a ride, so now my only option is to brave the polls on Tuesday. I WILL vote and am thankful for the privilege to do so, but it's going to exact a huge toll on my body to get there.

This evening

Thankful for my sweet hubby who, once again, brought home dinner when I've been too sick to be out of bed today. Don't know how people survive chronic illness without God and supportive loved ones? I am overwhelemed by my many blessings and God's indescribable grace toward me! Praying for many friends who don't have this kind of support.

Moments ago

Always find dizziness while already lying down to be a very strange sensation...

Tuesday, June 1, 2010

Life moves too fast sometimes! My 5th grader and I still have a good 12 weeks of Rome to the Reformation curriculum to finish this summer, along with 30 or so days of 1st with our daughter. We used to intentionally do a year-round schooling schedule but have tried for a more traditional summer off the past couple of years. I would honestly love to be "done" for the summer right now, but I'm praying for renewed energy, joy and focus for us all as we jump back in today after so many schedule interruptions. If you could take a moment to join us in prayer for this, I would so appreciate your encouragement and support!

We survived the sleep deprivation required for Little J.'s EEG last week. The testing and extensive appointment with his new neurologist went very well. He has not had any more seizure activity that we have witnessed, though his neurologist thinks the chronic tummy pain he complains of may be related to seizure activity, so we are watching that more carefully and doing further investigation. Tomorrow morning he will be hooked up to more EEG leads and sent home for with a backpack to do a 24-hour EEG read. If that one comes up all clear, we will just "wait and see" from there. If any concerns show up on the 24-hour test (the 1-hour was all clear) our next step will be MRI (requiring sedation) and possibly medication.

Sunday we purchased an audio/video monitor for J.'s bed and finally got him moved back to his own room after having him sleep with us every night since the ER trip. I honestly don't know that I'm sleeping much more soundly with him in his own bed because we are constantly waking to check the monitor, listen and watch. But it is at least a little easier on my body to have him out of our bed and maybe my new collection of bruises from his toes can start to heal up now. ;)

What a blessing to have Rick home for the 3-day weekend yesterday. We have just under 3 weeks left until my parents leave for their mission trip and time is feeling very short right now. (I depend on them heavily for help with the kids when my health tanks. They will be gone from June 21- until late September or mid October.) Rick grilled a couple of lovely racks of ribs and my parents brought over a huge watermelon for a backyard BBQ last night as we reflected with thankful hearts for the blessings of our freedom and the sacrifices made for us to enjoy evening such as this. To any with loved ones in the military, please drop by and check out the ministry my parents have served with for the past 38 years, Cadence International (formerly Overseas Christian Servicemen's Centers or O.C.S.C.)

I'm still trying to recover from our trip to Stanford. I have been logging symptoms and stats like temperatures daily for nearly 2 weeks now and while I know my doctor needs to have the medical record, it's rather a depressing process. I cried myself to sleep Saturday night, just frustrated at all I can't do, all I'm missing out on in daily family life, all I want to be giving my children and husband and friends but illness steals away. Sometimes I need that release of tears, but today is a fresh day, pity party is over, and I'm praying for wisdom, direction, clear priorities, peace, joy and contentment in the life God has called me to.

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